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Pudendal neuralgia / prostatitis

Discussion in 'General Discussion Subforum' started by rusland, May 12, 2017.

  1. rusland

    rusland New Member

    Hi. I am newbie on this forum but 3 years struggling with pudendal problems or prostatitis.
    I have read ezer and others stories but in my case the pain it's strictly sitting relating .
    I have a sitting job and pain it's so severe sometimes that drives me mad.
    This f***g burning pain once triggered will stay there for hours.
    Because this pain I am suffering of foggy mind and cannot feel any emotion the only one I fell is depression ...
    Then the urinary frequency and all this s**t .
    Any tip from you guys how to begin the acceptance with this?
    I have a bunch of diagnosis like prostate calcification, bladder neck stenosis, pudendal neuralgia, every doctor a different opinion..... and that's a huge barrier for acceptance...
    Last edited: May 12, 2017
  2. Boston Redsox

    Boston Redsox Well Known Member

    Well for me Dr fuel the pain...so my testing and searching is done...like you I have burning pain all over and only thing that will calm my fire is a med/antidepressant I am not saying that for you...yes 3 years is a long time but to some people here they been on the journey much longer...stay strong and present...if you been to many Dr and cleared stop your search. Or if you need more proof then by all means go...( I did) .
    jaumeb likes this.
  3. c90danwaiel

    c90danwaiel Peer Supporter

    Hi rusland,

    I was diagnosed with prostatitis, UTI, and then later, pudendal neuralgia, and I'm now 100% better. In my case, I'd gotten so many diagnoses (and my pain had changed so much based on what the doctors thought I had), it actually helped me to see it as psychosomatic. None of my symptoms made much sense. One other thing I did that helped was keep an 'evidence sheet' of every time my symptoms weren't triggered by certain activities. So if I sat down and there was no pain: I wrote that down. I also realize when my pain started and I only thought it was a UTI, that I'd gone on a 12 hour road trip and had no increase in symptoms from all that sitting. Yet, a few months later, sitting down for a few minutes made it worse. My pain wasn't making sense, and so I put that down on my 'evidence sheet' as well.

    In your case, if you've ever sat down and it didn't trigger pain, that'd be an instance I'd write down on my evidence list to prove to myself it was TMS and not physically based. Alan Gordon's program on tmswiki was really helpful for me, particularly his work on outcome independence. Not caring about the pain was the major first step for me to get past it. The pain will still be there at first. For me, I just focused on living my life, and treated the pain as irrelevant. It took a while - and it was hard not to become impatient that the pain was still there - but in time, it did fade away, especially as I let go of the fear that the pain wouldn't go away.

    Hope that helps and let me know if you have any more questions. Happy to help however I can.
    Last edited: May 14, 2017
    Leslie735 and kajspears like this.
  4. rusland

    rusland New Member

    Thanks Dan . That's amazing !
    It's very tricky with the "clearance" .. on pelvic pain they will always find something . Prostate calcification, Pudendal bla, bla,bla.... the doctors must find a reason to rip us off.

    Btw did you suffered depression , if so how did you get rid of it ? I think that's the key of following TMS approach.
    Seems impossible to go TMS when my mind is playing games!
  5. c90danwaiel

    c90danwaiel Peer Supporter

    I did become very depressed and anxious as the pain increased. I don't think it was the ultimate trigger of my pain at first (I suspect that was due to a false positive on an STD test and ensuing panic over whether I was feeling symptoms or not). I definitely do think the depression fed on itself. I become very negative and focused only on my symptoms.

    For me, getting out of the depressed state required me to become okay with the idea that the pain would never go away and then just live my life like normal. I expected the TMS therapy to work, but first, I had to develop that outcome independence. Once I started doing that long enough, the depression wore away (I was doing things other than googling my symptoms all day), and in time, the pain began to fade.
    sarah555uk and jaumeb like this.
  6. rusland

    rusland New Member

    Thanks for your support guys. I have spent 3 weeks in my home county. I have done all investigations again, despite I did that last year. I have been seen personally by the most famous University professor urologist. He did me an digital examination and ultrasound and did not see nothing wrong urologicaly from his point of view. Also I has sperm , urine test and PSA. Everything came back negative. I have been seen by a neurosurgeon and I had an MRI of my lumbosacral area whick came back negative as well.
    What tests should I do just to be 100% TMS ?
    The only test I haven't done yet is a cytoscopy .
    Do you think is worth it ?
  7. Sonic

    Sonic Peer Supporter

    I would say you have exhausted all tests and it's time to consider TMS 100%.
  8. balaenoptera

    balaenoptera New Member

    I think your problem is TMS. Among the other TMS symptoms I still have, I also had bladder, prostate and other urinary tract related problems for three years. The difference was that I had episodes. But these episodes grew in duration and frequency during these three years. The first episode was spring 2012 and I went to a urologist who prescribed me antibiotics because he found leukocytes in the urine. After 3 weeks it was over. Next year 2013, again in spring, followed the next episode and I went again to a urologist. He prepared a culture to see if it was a bacterial infection but I should start right away with antibiotics. Again in spring! I found that suspicious and decided to wait for the outcome of the culture. As I suspected, the culture was negative. I did not take the antibiotic but this time it lasted four weeks. In 2013 I also had another episode in autumn. In 2014 it was spring, summer, autumn, winter. And the episodes were longer and worse. The worst episode lasted two months. During these episodes I always had the urge to urinate and everything down there felt cramped, burning and hypersensitive. It was a nightmare to drive a bike (which I have to do every day to go to work), even the tiniest bumpiness on the route felt like a shock in my perineum and prostate, so I had to drive standing.

    To me it was obvious that it was TMS related. It was as if my prostate and bladder were so stressed (how I was and still am) that they needed only a benign trigger to freak out completely: be it the change of season, swimming in the sea during vacation or if I had to hold urination for too long on a car ride. I recommend that you address it like TMS. But I also recommend, no joke, green tea! Even though in my case it was clearly stress induced and I still struggle to handle my life stressors and my other TMS symptoms, green tea helped me tremendously in this case. During my last episode I remembered that in the past I used to drink green tea more frequently and that it always has a diuretic effect. So I thought, why not flushing the system, it can't do any harm. I drank like 4 cups a day and after one week it was gone! After that I decided to drink at least one cup each day also without having symptoms and once I sensed a slightly unpleasant feeling in the urethra (that's how it usually started) I drank again several cups a day. I have not had it for 2 years and now I only sporadically drink green tea (addicted to coffee). I cannot guarantee that it also helps others with similar problems, but what a cheap and simple try without any side effects. It does not even have to be special, organic or somehow certified green tea. Just regular green tea did it, like 2€ for 30 tea bags. By the way, green tea has indeed been proven to relax smooth muscle, alleviate prostatitis and to inhibit viruses and bacteria.

  9. sam908

    sam908 Peer Supporter

    I recently refused a cystoscopy offered by my urologist. It will invariably reveal "something," and will lead to several surgical procedures, none of which will likely have any positive effect. This has been the experience of two of my friends.
  10. CaptainHope

    CaptainHope New Member

    Read my new thread. Thanks.

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